Kirianna's Care Fund

Hello, we are Kirianna's parents, Danny and Susan, and we are here to tell you her story so far.

 

Kiri was born in September of 2015, and it was a couple of days later we found out about her condition. Until then, we didn't know that anything was going on.

 

 

 

 

She was born with a condition known as Miller-Dieker syndrome, a genetic disorder that affects many things, mainly how her brain formed. Miller-Dieker leads to a condition known as Lissencephaly, which means 'smooth brain.' Most brains have ridges and valleys, but hers is entirely smooth. That malformation leads to minimal muscle control, severe mental ability limitations, hourly seizures, and a very limited lifespan. Many of her doctors did not expect her to live much past her second birthday, and here she is, over NINE years old!

 

 

 

 

Over the years of her life, she has had many difficulties, with the most noticeable that threatens her life being breathing problems. If she gets something as simple as a cold, which most of us would take a few days to recover, for her, it is usually a two-week stay in the ICU. There was one year she was there six times over that year. She also has daily problems with her breathing safety at home. Since she cannot swallow, any saliva in her mouth will go down her throat into her lungs, putting her in danger of pneumonia. In those cases, we have to use the suction device we have to remove as much as we can while we can.

 

She requires care and monitoring 24 hours a day due to her many health problems. As such, it is difficult for us to work full-time jobs, and while she is in the hospital, we need to be there since the nurses cannot be in the room constantly for anything that might happen while they are with another patient. As you can imagine, that makes it difficult to hold on to a job since most employers are not able to cover for you when you need to be in the hospital 24 hours a day to care for your child.

 

 

 Daddy and myself

 

Our GoFundMe is asking for funding to cover our bills while we care for Kirianna and pay for the supplies that insurance does not cover. While the insurance will cover her prescriptions and doctor visits, we still have over-the-counter medicines that it does not cover, as well as other supplies that a nine-year-old usually would not need, like diapers, wipes, and other items like that.

 

Anything that you would be able to donate would be greatly appreciated, and you have our thanks for the help you are providing for us. If you are not able to donate, even sharing it over your social medias or at work postings help a lot.

If you have any questions, please ask; no question is off-limits.

Me and my mama just hanging out.